What Parkinson’s disease took from her, our team of experts gave back.
Twelve years ago, in the late fall of 2003, Judy began presenting the symptoms of Parkinson’s disease. It was possible that the disease had begun to develop even earlier, and the first doctor she saw in early 2004 gave her a dire outlook.
“He said, well, you have Parkinson’s,” Judy recalled. “You have five years and you’re going to be bedridden on life support. I suggest you go home and get your affairs in order.”
Judy was in shock, but not resigned to her fate. A friend of hers referred her to a Dr. Goldstein at Northwestern Medicine Lake Forest Hospital.
“My life changed drastically,” Judy said. She met with Laura Goldstein, MD, a medical neurologist, and in her first meeting Dr. Goldstein arranged to have Judy evaluated for speech, occupational and physical therapy. Most notably, she encouraged Judy to meet with a brain surgeon at the downtown campus of Northwestern Memorial Hospital to discuss surgical treatment for Parkinson’s disease.
“Sometimes we can get someone through their entire illness with just medication,” Dr. Goldstein explained. “But in Judy’s case the illness started when she was relatively young. By the time I met her, she was already ten years into the illness and the medications weren’t controlling her symptoms. She was limited in her activities.”
By this time, Judy’s tremors were getting worse. She couldn’t walk, couldn’t do much of anything. Still, she took the train downtown to see the specialized deep brain stimulation team of neurologists and a neurosurgeon at Northwestern Memorial Hospital. Cindy Zadikoff, MD, and Joshua Rosenow, MD, evaluated her and found she would be an excellent candidate for brain surgery.
Deep brain stimulation (DBS) is not unlike a cardiac pacemaker, but instead of heart rhythm, it regulates electrical signaling in the brain. Electrodes implanted in the brain are connected to a neurostimulator placed under the skin near the collarbone to send signals to the brain and help restore more normal movement. After the surgery, a care team works to optimize the signaling and follow-up visits ensure a comfortable balance between stimulation and medication.
In addition to pioneering new techniques for performing DBS and other neurosurgical procedures, the specialists at Northwestern Medicine work closely with research partners to find new breakthroughs in treatment. Current clinical trials for early and moderate to advanced Parkinson’s disease include testing the efficacy of potential medications and the safety and effectiveness of DBS for specific symptoms.
The surgery itself requires a true collaborative effort to be successful. It requires neurologists very experienced in managing the patient before and after surgery working closely with a neurosurgeon very experienced in performing DBS. Furthermore, the neurologists and neurosurgeon must also work well and closely with a group of subspecialists.
One such team scheduled and performed Judy’s first surgery in January 2014 with a second surgery for the other side of her body that May. She visits Dr. Rosenow in Chicago for regular checkups and does her rehab in Lake Forest.
“It’s a very unique resource that our patients like Judy have, in that the Northwestern Medicine network extends to a large geographical area,” Dr. Goldstein said. “We have experienced neurologists and an interdisciplinary rehabilitation team so she can participate in the physical, occupational and speech therapy close to home, and yet have access to more specialized and technologically advanced medical care in the same system.”
There is no cure for Parkinson’s disease. Surgeries like deep brain stimulation help considerably – they are life changing – but the disease is progressive, it can get worse. Judy knows this and she has decided she’ll use her time to make an impact for the better, both for herself and for others with the disease.
After she retired, Judy went back to school to become a professional counselor. She’s now using that license to help develop the Parkinson’s disease support group in the suburbs at Northwestern Medicine Lake Forest Hospital. She’ll facilitate the group and meet one-and-one, so people can find the support they need.
“It’s a nasty disease, and there are so many losses, you’re experiencing grief after grief after grief with each loss,” Judy said. “I’ve always wanted to make a difference and I feel like this is one way I can really give back and help people because I’ve been there.”